The “Eventual Right Turn”

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Have you ever gotten stuck behind that driver that had their blinker going in front of you and you could never really tell if they truly planned on making a turn or if they forgot all together their blinker was on?  It drives you nuts!  Whether out loud in the car or secretly in your head, you are thinking, “Goodness guy!  Are you ever gonna turn!?!”

We call it the “eventual right turn”.

I’m all about comparing every day life events to lessons learned because they are so much more relatable.  So, I got to thinking the other day about life and all my “eventual right turns”.

Riding through life, you have so many choices to make.  Each with their own set of consequences both good and bad, depending on your decisions.  And then, you get stuck.  You totally planned on turning, eventually, someday, any day, but you are stuck in the slow lane, blinker on, and you NEVER TURN!

Perhaps to you (the driver with the annoying blinker on) there is not much frustration in the matter, but to those following behind you, it is driving them insane!!  So, how does this relate to life you ask?  Well, let me tell you!

There was a breaking point for me a couple months ago when i realized i had so many things going on in my life, i wasn’t paying attention to any of them.  With the constant demands of my little one and all his skin issues, my oldest and his learning struggles in school, my husband and his crazy work schedule and back issues, my insane health issues, my army career, and the inevitable student loans, I was completely overwhelmed!  I was going through motions, but canceling things randomly through the day to survive.  I was making promises that I could never keep.  Like, “I promise I’ll make dinner tomorrow”, “I promise the dishes will be done later”, “I promise I’ll sit on the floor and read to you”, “I promise we will get together this week”, and the list goes on!  MY EVENTUAL RIGHT TURNS!!!

Now, nobody blamed me!  I had my plate more than full and exhaustion became a color that started to look good on me.  But my health was drained, my smile was disappearing, and soon, i was in preservation mode.  Ever been there???

While the whole world held their breath, I made some turns and it made all the difference in my life!  And I can guarantee there were huge sighs of relief coming from behind me in the form of “thank goodness she finally made up her mind and turned!” 🙂

So, what were those turns?  Well, I began a new workout program, I got me some good books, and a planner, made some amazing new friends in the form of a motivation and accountability group of women, and started getting my life in order.  There is nothing you can do about daily struggles.  They are always gonna be there!  But you can learn techniques to deal with them and make the decision to make a decision to make things better!

Raylen has been my biggest and most encouraging struggle in life!  We started new lotions that have literally made his skin baby soft!  but with that comes lots of other issues like bleeding, itching, long nights, pain, and frustration.  There are a thousand things that we deal with everyday from his ears to his legs, to his fingers, teeth, eating habits, hydration, etc.  But, by finally making the decision to take care of myself, I have a tremendous amount of energy found in my new daily workouts and lifestyle change to care more tenderly for him!

Ever heard the phrase they tell you on the plane to “put your mask on first”.  There is a reason for that!  I cannot possibly help anyone else if I’m not caring for myself and I only frustrate the world around me when I make promises to do that and never actually TURN!

Is it starting to come together yet?

What is your “eventual left turn”?  Is it taking care of yourself?  For most mommy’s and even daddy’s that is exactly it.  But maybe it’s something else.  Maybe it’s a trip, a job change, a move, a promotion, a baby, really, ANYTHING!  You know what it is without me telling you, cuz you’ve had your blinker on for quite some time!

So….

What are you going to do about it?  Turning can be a scary thing!  Not knowing for sure if its the right time, the right decision, the right anything.  But once you make the turn, your life will start to blossom and you will be asking yourself why it took so long to finally make that turn!  I know I did!

So, don’t get caught up in the eventual decision.  Make a plan, make a turn, and start on a new path within the adventures of life and start really living!

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Here and There and Everywhere

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We are starring 20 months in the face with little Raylen and can’t help but stop and say, WOW!  What an amazing 20 months of grace, excitement, worry, blessings, and milestones it has been!  It has been a roller coaster ride of huge leaps and setbacks as we grow closer and closer to his second year.  Here is some updates on how he’s been doing over the past several months.

WALKING!

While it may not seem like a huge feet, for Raylen, walking as been a huge milestone.  Not entirely sure if it was due to the tightness of his skin causing the inability for his little muscles to fully stretch out and form, or a delay all his own, but thanks to some amazing physical therapists, Raylen is walking almost all on his own.  He’s had frustrating set backs in this area with his equilibrium being challenged by the scale build up in his ears, the lack of muscle control in his left side, and his overall flat footed feet, but with an adorable mini walker and some classes with his teachers, he’s nearly on his way to being fully efficient!

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SIGNING!

Raylen is the most amazing communicator to have so few words at his disposal.  He is so smart, he understands everything you’re saying and can follow several direction commands at a time.  However, his vocabulary, though once extremely large, has dwindled into very few words.  We aren’t sure what has caused this delay, but with some baby signs, we are finally getting somewhere!  Raylen has learned please, thank you, more, all done or finished, change, please stop, milk, eat, and diaper!!  He is putting together noises for animals, like monkey (which George is his favorite, so he mimics his noises so incredibly well!) elephant, cow, duck, chicken, snake, and motorcycle!  Small words like dada, mama, nana, bo bo, dog, and car are still with him and every now and then he tries the phrase, “there he is” to point out pictures in books.  But his eyes speak much louder than anything he says or signs.  He has a huge ability to flirt and beg, and point you in the right direction with nods, smiles and hugs.

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EATING and DRINKING!

You wouldn’t think this is a huge milestone for Raylen, but thanks to his huge calorie intake, eating and drinking enough is a big task!  There was once a day Raylen would eat everything but tartar sauce, but lately it has been a struggle.  For every milestone there has been set backs.  Raylen has started to drink water from a sippy cup and taking in ALOT of milk, but with that comes the increase of miralax to help him go potty.  There has been issues with major rashes due to his ph level increasing with juice and fruit intakes that burn holes through his groin skin, so to combat this, he can no longer have juice or fruit products:(  Fortunately, he finally has some teeth that have cut through which is helping him to chew down some of the foods he really enjoys.  He has 4 teeth on top and 2 teeth on the bottom!  Silly little boy got his eye teeth just in time for halloween and it just made us laugh that he looked like a little vampire!

 

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Can you see those little vampire teeth?

SHEDDING!

I cannot even begin to tell you the roller coaster ride with this one!  Anyone who has experience with ichthyosis knows this is  a struggle that never ends.  Raylen is now at the age and stage of fighting with every lotion and tub scrub.  We were only ever successful one time with fully exfoliating him and well, he honestly looked liked a different kid!

But, getting our hands on a specific amount of urea in a lotion or shampoo is very difficult.  So, with samples provided by his dermatologist and a now discontinued lotion, we were able to give him the maximum shed possible.  However, it is back to the drawing board.  Why oh why do they discontinue products that work!?!  I’m sure I’ll never understand!

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LIVING!

No matter what comes and goes, how the roller coaster ride twists and turns, we are living the life!  Beyond blessed!  A momma of a sweet little boy donated a TON of clothes and shoes to Raylen and he is covered for the fall and winter this year and most likely next year!  A local charity organization gave us enough money to purchase items for Raylen to help with his overheating like a mesh stroller, air flow carseat, hurts bees clothes and bedding, and a mesh carrier!  I look around and can’t believe how blessed we are!  Raylen’s tub continues to keep up with his massive skin making and we have only recently had to purchase a new vacuum.

COMMUNITY!

You never realize just how much you appreciate your community of people when you have a child with a visible or invisible disability until you travel outside of it.  Going to Walmart becomes a celebrity run, as every worker and even most customers either know Raylen or have heard of him.  Sweet, loving folks, with honest questions are open and caring about their approach and Raylen’s sweet disposition and brothers quick witted answers continue to amazing and inspire me.  Outside of our little area, it is hard on my mommy heart.  People can be harsh and overwhelming.  We try so hard to be careful, cautious, and patient, but it can be very difficult.  We are so glad to live where we are and be surrounded by the folks we are.

Some of you all know, we recently tried to sell our house, due to several reasons, mostly to get closer to family, but as the days wore on, we realized, this is so much of our family.  The people and community that surrounds us and Raylen.  The school, church, neighborhood..everything.  Perhaps someday, the time will come to make a move.  But for now, we are here to stay.

So, here is to the on-coming months ahead and to many more wonderful twists, turns, challenges and victories in our never-ending adventures in the journey of life!

In the Stillness.

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The quiet is my own worst enemy and yet my greatest strength.  I avoid it like the plague, but desperately need it to survive.  How can something so wonderful be so feared?  Why is such a gift so controversial by design?

“Prone to wander, Lord, I feel it…”

A mother’s heart is never still, neither is her mind.  Always on a journey, looking for the good of her family.  Busy about our business, thousands of things pull at our apron strings.  Children and their needs, never enough time for snuggles and prayers amidst the daily grind (our mind goes there).  Husbands and their needs, never enough time for morning kisses and a listening ear (our minds go there).  Families and friends and their needs, never enough time to call a friend or visit a family member (our minds go there).

So goes the moments of regret and frustration when the time much needed was spent in silence and now you have much to much catching up to do.

So how should one ever conclude that stillness and silence are a positive and most needed event in our daily lives for survival?

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When our ability to hear the voice of God is altered by the business of our lives, silence becomes our only survival.

This is the lesson God is teaching me as of late.

My mind, above all, is an evil when idle.  It deters me, discourages me, fails me, scolds me, hurts me.

But, did you know there is a very interesting difference between still and idle?

Idle: without purpose or effect; pointless.

Still: deep silence and calm; stillness

To be idle is to be pointless, no reasoning for it but to waste valuable time and we mothers know, there is no time worth wasting.

~But~

To be still is to be calm and silent, not a pointless endeavor, but for the purpose of stillness and calmness.

So, idle minds should have no place, but with a discipline one can learn to utilize the silence to recognize the voice of the Almighty.

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So, here we are, busied about, rushing to and fro, cumbered about, worried, concerned, overwhelmed.  Life has been “taken by the horns” and has left us exhausted and wounded.  We desperately need God to “show up” and yet, He abides in the place we know the least.

In the stillness.

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The “I’m Sorry” Whisper

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Scrolling through Facebook today I saw a heart-broken post by another sweet ichthyosis mommy and it stopped me in my tracks.  “Still find myself whispering, ‘I’m sorry'”… and suddenly I was back in my hospital recliner looking through the incubator whispering prayers of desperation…

What parent doesn’t step back at one point in the life of their children, young or old, and wish they could take every bit of everything negative away from their kiddos and make it all perfect?  Which one of us hasn’t ever wished on themselves the aliment of their child over seeing their kiddo suffer?  It is a daily struggle between God and ourselves to allow Him the right to see our children through their situation and stand back in awe of His plan.

As an ichthyosis parent, I am so much more aware of this “I’m sorry” whisper than I ever was before.  There are days I cuddle my little one in his hardest days when his skin hurts and itches, when he’s struggling to stay cool, when he’s constipated and sick, when the stares are more than I can handle and I whisper “I’m sorry” in his ear.  Not the “I’m sorry your in pain” or “I’m sorry you are scared”, but “I’m sorry, this is all my fault”.

Genetics are a weird thing, and I am still completely clueless on most things genetic.  But in Raylen’s situation, it took me and my husband to contribute the genes necessary to create his mutation.  This is hard for parents like me to swallow.

The thought…

This is all my fault.

I made the decision to have you, to conceive you, to deliver you.  It was my gene that caused this and now, you have to live with it forever and I can’t wish it, pray it, or will it away.  I don’t have to wear your skin, feel your pain, conceal your hurt.  But I have to stand helplessly on the sideline and hope for the best.

This is the most candid and gut-honest feeling we conceal on a daily basis.

So we whisper “I’m sorry” in their ears in hopes they can understand how much we would take it all back….

But, in the moment I read the post, I recognized that feeling of desperation and true, deep love coming from that mother’s heart and penned this down…

U are not alone momma, we have all been there and struggled the same way, much more than we want to admit, but God does everything for a reason and sometimes we mommies are awful for wanting to intervene on every bit of our kiddos behalf and change every bad circumstance for them. But I got stronger in this area by remembering, it’s by those things we become stronger. More than anything we want our kiddos to be strong, independent, and awesome kids and adults. We want them to face the world head on and fear nothing. We want them to love fearlessly, and be fierce! — will have an amazing understanding and heart for others we will never comprehend. It’s hard on a mommas heart, but ur giving him the very best gift he could ever want, unconditional love! So love him fiercely, hold him tightly, and teach him to soar! Ull never regret God made him so perfectly exactly who he is!

My heart was touched and I decided to write this blog.

Whether your kiddo has ichthyosis, cancer, a heart condition, genetic disabilities, an unknown diagnosis, or any other type of situation your heart just breaks over and you wish you could change it, remember Psalm 139:14:

I will praise thee; for I am fearfully and wonderfully made: marvelous are thy works; and that my soul knoweth right well.

God made our children fierce!  He created them each with a purpose, just as He created us…

WITH A PURPOSE

We may not understand why or what or how, but HE is good!  He has a plan

For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end.  Jeremiah 29:11

Nothing takes Him by surprise.  Along with their “condition” He also created them with a personality to fit.  We can’t understand it, because we are not experiencing it.  I can’t wait for the day Raylen can talk to me and tell me what he’s thinking and feeling, but I’ve already met some kiddos who are old enough to express how they feel and they are some of the sweetest, most understanding and compassionate human beings on earth!  AND patient!  Oh my goodness!  They amaze me with their smiles and their attitudes of acceptance, and in most ways, they don’t even think about themselves as being different in any way.

So, yes, we are going to whisper “I’m sorry” from time to time.  We are gonna feel guilty, even though, in all honesty, it had nothing to do with us!  We didn’t choose it, we didn’t force it, we didn’t create it!  But we are human and sometimes just knowing we are not feeling this alone is enough to make our hearts feel better.  But in the end, our whispers slowly change from “I’m sorry” to “I’m so thankful!”

So thankful you were given to ME, so thankful you are so perfectly fashioned, so thankful for your smile, for your skin, for your heart, for your personality, for your everything;

BECAUSE,

As much as we think we are teaching them…

They are really teaching us!  Every day, in every way, we are being taught by our kiddos just how amazing life can really be! (’cause we tend to forget this truth in our crazy, messed-up, adult world!!!)

“You’re Gonna Miss This”

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For those of you who know me well, and even some of you who don’t, you know I have a weakness for good ol’ country music.  Rarely does my radio dial move from the station of backwoods country tunes and I’m not a real big fan of “Today’s Country”.  Honey, it just ain’t all that country.  Family, lovin’, momma’s cookin’, kids, good friends, good times, good neighbors, and my hound dog…that’s what good country music is all about!

And so sat the radio dial this past Saturday on our way to Dollywood….

Good ol’ Trace Adkins came on with his famous “You’re Gonna Miss This” and I was inspired!  So here we go…

Since as far back as I can remember, I’ve wanted to grow up.  Being a mommy was all I really truly aspired to be.  I’d rock my baby dolls to sleep and dream of what life would be like raising my own children.  Hardly a day went by that I wasn’t almost discontent that my time had not come along yet while all my other friends were getting married and having babies.  Soon as my time came, I had another dream I had to fulfill and I just couldn’t get there fast enough.

Slowing down is not my strong suit.  Patience is a virtue I lack.

But then, Raylen came along.  Long, sleepless, endless nights (much like tonight) rocking my baby to sleep, praying for relief from the overheating, the itching, the constipation, the irritation, the snotty/stuffy nose.  Nothing goes by quickly anymore…

But guess what!

It’s the new normal in our adventure!  I’m in no rush to make it change.  I drag, I complain, I’m barely here, I forget ALOT, I over caffeinate! But I’m Not Gonna Miss This!

One of the greatest pieces of advice I have ever been given by some mommies in my Ichthyosis support group was to sit back and enjoy the ride.  Don’t Miss Anything!  And now, it’s the same advice I give other mommies (no matter if your child is disabled or not).

Stress and exhaustion can cause you to forget alot of things.  Little things here and there and everywhere.  I wore my husband’s flip flops to pick up my son from school, forgot to put on deodorant on my way out the door to Dollywood, left the clothes in the washer for 3 days, lost my computer for a day and a half, and somehow managed to keep myself alive today after going without food until I remembered in a frantic episode of the shakes.

BUT…

I remember the smell of Raylen’s body covered in Auqaphor the first time I got to hold him outside of the incubator.  I remember the first time my boys were all together in the same room getting ready to head home for the first time.  I remember every poopy diaper, every piece of clothing that had to be washed special to get the lotions out, every rearranging project to try and make things flow easier.  I remember the coos, the smiles, the laughs, the firsts, the worries, the fears, the tears, the joys.  I remember them all!  Not because I have a great memory, but because I purposed NOT to MISS THIS!

Having a child with a disability has awakened me to the world of “WAIT”.  Funny how God capitalizes on your weaknesses.  Kind of a cliche verse for Christians is Isaiah 40:31:

But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

Waiting is the prerequisite to strength.  Almost like a recharging of your batteries.  Rushing through, you miss special times with your kids, but you also miss great strength and moments with your Heavenly Father.

The second part of the verse reminds me of the energizer bunny commercial…running and not being weary, walking and not fainting…He just keeps going and going and going..right? 🙂

So while the kids are screaming, not sleeping, “destroying” the house, driving you batty, what do you do?  Do you try to rush them through the routines to move on to the next day? Do you wish it away?  Do you remind yourself “this too shall pass”?

I’d like to challenge you…

Break away from that frame of mind and remind yourself, one day, you will miss this!  Ease yourself into a thought process of soaking it all in.  Make mental notes, jump into your kiddo’s world.  Thank God for every spill, mess, and fussy moment.  They are opportunities in the journey to wait on God and renew your strength.  To enjoy the adventures of childhood in all its mess and glory.

Don’t rush, don’t MISS this! ….

“You’re gonna want this back, you’re gonna wish these days hadn’t gone by so fast.  These are some good times, so take a good look around, you may not know it now, but you’re gonna miss this!”

-Trace Adkins

Just an update:

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Time has flown by and for every constant there has been a change added to the ebb and flow to our daily lives and schedules.  Raylen is growing up before our eyes, tackling hurdles and challenges, learning new things, and never ceasing to amaze us. We’ve met new friends and said goodbyes to some old. We’ve welcomed new obstacles with delight and dismay and have found our strength in God and each other.

It’s not just one long journel of the journey, but many little stories of adventure along the way!

So, what IS going on? Well, Raylen has now begun his occupational therapy to help him with his fine motor skills. Still in PT, but finally able to crawl, which he surprised us all with the day of his first birthday party!! That said, he turned one with a bang, literally, as he enlightened us on just how fragile his skin can get. Being his fearless self, he ended up with seven different scratches on and around his face right before his party!

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He is growing but still tiny. We weighed in at 19 1/2 pounds just a few days ago while at the GI doctor, discussing his acute issues with constipation and his enormous calorie intake! (Incase I haven’t told you yet, he eats at the rate and intake level of a 5 year old!) He’s 29 inches long and super amazingly smart!

He loves books and could read them all day long!  He has captured our hearts over and over with his contagious smile, warm hugs and kisses, and charasmatic personality!  Seems there is nothing he can’t or won’t do or try!  He keeps us on our toes 🙂

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Every day brings newness and change while still sticking to a daily regimental plan of care. As we embark on the warm months ahead, the skin care challenge will get rough and ucky! Overheating and hydration balance will be key! We will be doing some investing in new equipment like cooling pads, fans, spritzers, vests, etc. Careful planning and packing will be essential to any and everywhere we go. Handicap tags will be issued to keep us closer to the entrance and exits to make strategies for trips a little smoother.

 

It’s a process. I teach more than I learn at the doctors now, because there are no more answers left. All the info they can offer is now exhausted. Most of it is a guessing game. But we drive on.

No matter what the day brings or how it turns out, I’m so thankful God chose this journey for us! For some, it seems exhausting and overwhelming, but for us, it’s just one adventure after another! God has been so good to us!

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A Tribute to Daddy

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“I’m going on a picnic and I’m gonna bring… Arthritis, Bad knees, Cankles, a Duck?…”

This was the “going on a picnic” game my husband and I played on our car ride Saturday…as we came up with thing after thing, I remember looking over at his smiling face and several things came to mind I wanted to write about in my next blog.  We continued our game, sang along to the radio, held hands and finished our short trip along our journey of life, but the memory still remains etched in my heart and mind.

I usually write this blog for others to read and enjoy, learning about our life lessons, how Raylen is progressing, and logging our journey along the way, but today, this is for my boys…

This is about the man in your life you call DADDY.

 

There is a lot to be said about a mom that stays home with her children, especially one with special needs.  Without being said, it tends to be her in the spotlight, answering questions, staying on top of the home and the care taking, answering the phone calls, paying the bills, cooking the meals.  But, none of that could have been possible without your daddy!  You see me everyday.  I’m there when you wake up and when you fall asleep, I’m there to fix your boo boos, mend your broken toys, fill your belly, and clean your clothes.  But what in the world daddy wouldn’t give to get to see all of that.

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I record the videos, send him the pictures, tell him about the day when he calls, and give him the briefing when he gets home, but its the little smiles, giggles, strange things you say and do, that I can not replicate for him.  Still, he is there, pushing on, working hard, picking you up in the middle of the night, kissing your forehead before he leaves for work and when he gets home, tho you’re fast asleep.  I see his saddened face when he misses your basketball practice, your first crawl, your crazy laughs, your temper tantrums, your anything.

There are wrinkles on his brow he never had before…

Wrinkles from worrying if all the bills will be paid this month, if you will have all you want and need, if the house will be safe and warm while he’s gone.

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He also has laugh lines he’s never had before, wrinkles from all the funny faces he makes with you, the memories you made outside in the sun and the snow, the tickle wars, the laughing so hard he can’t get up.  I see him smile at you while you sleep through the rearview mirror on our trips and the silent smiles he makes watching you imagine.

While we are busy at play, at school, at doctors, out and about, he is hard at work, thinking of you.  I feel him roll his tired, hurting body out of bed every morning and sneak into your room to see your faces one more time before he has to leave.  I hear him giggle under his breath when he hears your happy voices in the background on the phone.  I even hear his daddy side when he can tell you’ve been causing mommy to pull her hair out all day:)

He’s the man I fell in love with for a thousand reasons, but one of the greatest things I love about him is how wonderful of a daddy he is to both of you. How hard he works and how much he sacrifices to be sure we are all safe and sound and cared for.  He works extra so mommy can stay at home and be everything to you I get to be.

Sometimes you may question his silence or his temporary absence, but I want you to know it is never chosen to be away from us in any way, but rather the opposite.  He is quiet so you can talk, silent so you can imagine, watches as you grow, and does all he can to be sure you know the best and most perfect Father you will ever meet.  Your daddy wants you to see Jesus in him.

If there is ever anything I could want for you both more than anything in the world, it would be to turn out like the man your Daddy is; but more than that, to turn towards the Heavenly Father your Daddy strives to be like.  You both have been blessed as his sons, and I as his wife.  I just wanted today to be a tribute to him as Valentine’s Day has come and gone.  No one will ever love you like your Daddy does, save your Heavenly Father.

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